1. Politics, Illness, and Uncertainty Ray Teets, MD Myles Spar MD Melanie Gisler DO IM4US conference call 10/4/12 1 Lyme Disease

2. 2 Illness associated with infection from Borrelia Burgdorferi via a deertick bite Recently discovered infection with significant burden (1970’s) Named for a town in Connecticut, but arguably found throughout the US (and beyond) Highly controversial…

3. Medicine and controversy? 3 Controversy centers around the triad of: Politics: creation of guidelines that thus have effects on How practitioners understand disease (lyme) How practitioners treat disease like Lyme What insurance companies will pay for What is “good medicine” Uncertainty and evidence: how to prove the definitive diagnosis of Lyme disease when it is a fastidious spirochete; when symptoms are non-specific Illness vs disease: how to hear, witness and alleviate illness in our patients while finding disease to treat Sub-Corollary of illness and evidence: how to measure illness?

4. Game plan 4 Ray talks about patient presentations, attempting to capture both “sides’” opinions Myles talks about diagnostic methods, lab tests, etc Melanie talks about her experience as chronic lyme disease practitioner in California, talking about her experience in Diagnosis Treatment Discussion!

5. Acute lyme disease 5 Perhaps less controversial Diagnosis for early illness (aka early localized) Erythema migrans (EM) (30 - 80%?), accompanied by viral illness symptoms: headache, fatigue, myalgias, fever, malaise 1-2 weeks post-tick bite but can be 3-30 days Treatment Docycycline, amoxil, cefuroxime, or zithromax… for 4 weeks Prognosis believed to be good

6. Chronic Lyme disease 6 Controversy begins… I’m using the term to identify any illness after early localized illness (usually is greater than 6 months) Controversy centers on: How to diagnose chronic lyme disease What symptoms qualify What lab tests to use How to treat

7. Chronic Lyme disease 7 The parties involved: IDSA, CDC: generally argue that symptoms of late disease: Are fairly circumscribed: Arthritis or Encephelopathy, peripheral neuropathy Interesting critique by JD candidate Johanna Ferguson summarizing Pamela Weintraub’s book Are treated with short-term Abx ILADS, California Lyme Society, others Late symptoms can be more nebulous, can have antibiotic failure and may require more complex and longer-term treatment Confections are important to consider

8. What’s the evidence 8 Evidence is difficult to come by Ie, finding patient outcome studies that clearly direct best care difficult Recent AAFP article identifies the level of evidence for 5 of 6 common recommendations for practice as level “C” Consensus, disease-oriented evidence (Wright AAFP, 2012)  ie IDSA consensus Hard to culture bacteria (spirochete), with possible co- infections, causing non-specific long-term symptoms

9. Patient Presentations 9 Review of IDSA clinical stages: Early localized Erythema migrans (EM) rash (roughly 80%), accompanied by viral illness symptoms: headache, fatigue, myalgias, fever, malaise EM rash often at tick bite site? 1-2 weeks post-tick bite but can be 3-30 days

10. Patient Presentations 10 Early disseminated (within the first 6 months) Cardiac, eg AV block (1-2 months after initial infection) Dermatologic, multiple EM rashes Musculoskeletal Arthralgias Myalgias) Neurologic (lymphocytic meningitis, facial nerve palsy, encephalitis)

11. Patient Presentations 11 Late lyme disease (As per IDSA) Greater than 6 months, occurs in patients not having receiving any antibiotics Pauci-articular arthritis (most common) Neurologic symptoms (rare) Encephelopathy Peripheral neuropathy encephalomyelitis

12. Chronic lyme disease (as per ILADS) 12 May be used as shorthand for patient with chronic lyme symptoms, but may have more than infection with borrelia burgdoferi Symptoms Cognitive difficulties Neurologic symptoms Paresthesias, neuropathies Cardiac symptoms Fatigue Myalgias Can be debilitating and severe

13. Resources 13 Ferguson J, “Cure Unwanted?” American Jrnl Law & Medicine. 2012 Weintraub P, Cure Unknown, Inside the Lyme Epidemic. 2008 DeLong et al. “Antibiotic Retreatment…” Contemp Clinical Trials. 2012 Wright et al, “Diagnosis and Management..” Amer Fam Practice. 2012 Feder et al. “A Critical Appraisal…” NEJM. 2007 ILADS website (International Lyme and Associated Diseases Society) ilads.org